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Information for Ancillary Studies in PREDICT-HD


PREDICT-HD is a 32-site observational study of individuals at-risk for Huntington's disease (HD). The PREDICT-HD study has been funded since 2001 to collect imaging and clinical assessments that will help to advance our understanding of the natural history of HD. In this regard, the PREDICT-HD study cohort and database have become international resources that offer an unprecedented opportunity to examine early HD progression and prognostic biomarkers. The goals of the PREDICT-HD study focus on laying the groundwork for future clinical trials in an at-risk HD patient population. The specific aims of the PREDICT-HD study were designed to 1) improve prediction of disease diagnosis in healthy individuals using longitudinal measures of plasma, imaging, cognitive performances, motor ratings and psychiatric measures; 2) enable identification of assessment tools for disease progression prior to clinical diagnosis and characterize the natural history of these clinical and/or biological readouts; and 3) improve the validity and reliability of disease measures upon which the power and sensitivity of multi-site trials and studies depend. To learn more about the PREDICT-HD study, variables measured, conversion statistics for PREDICT-HD 1.0 and 2.0 protocols and approaches and terminology utilized to classify participants across HD longitudinal studies please view the Overview of PREDICT-HD powerpoint presentation.

Extensive clinical data including the Unified Huntington's Disease Rating Scale (UHDRS) motor examination, cognitive and neuropsychiatric assessments, and structural MRI imaging have been collected over a ten-year time frame. A subset of these data, representing over 25 clinical variables such as the UHDRS score, CAG repeat length, and Cognitive Assessment Summary (CAS) score, are accessible through the dbGap website

Biospecimen samples including plasma, blood and urine are collected yearly and stored at the NINDS Human Genetics DNA and Cell Line Repository at the Coriell Institute for Medical Research. A summary of the current biospecimen samples available under the PREDICT-HD 1.0 and 2.0 protocols and laboratory specimen management standard operating procedures are provided below.

PREDICT–HD 1.0 Biospecimen Sample Inventory Summary (pdf, 97.5 kb)

PREDICT-HD 1.0 Biospecimen Sample Standard Operating Procedure (SOP) (pdf, 672 kb)

PREDICT–HD 2.0 Biospecimen Sample Inventory Summary (pdf, 104 kb)

PREDICT-HD 2.0 Biospecimen Sample Standard Operating Procedure (SOP) (pdf, 460 kb)

To apply for ancillary studies in PREDICT-HD requiring additional clinical assessments or biospecimen collection the following form must be completed to enable the PREDICT-HD Executive Science Committee to access the feasibility of the ancillary study in the framework of the PREDICT-HD parent study. PREDICT-HD Ancillary Study Approval Form (Also available in PDF format, 1.25 mb, This form can be sent to the following email address predict@mail.nih.gov),  (required for additional clinical assessments or biospecimen collection within the parent PREDICT-HD study infrastructure).

Last updated March 20, 2013